Thursday Nov 28th
- Born at 7:08am
- HR 60, blue gray all over, pupils not reaction
to light, not responsive, not breathing
- Transferred to St Mary’s Hospital within hours
- Started the cooling process, hypothermia
procedure for asphyxiation
- We were transferred just a few hours after that
to St Mary’s
- I did not truly understand the severity of the
situation, I was in denial
- I thought cool her down, warm her up she will be
home not too long after that
- I thought everything is fine
Friday Nov 29th
- Lots of doctors visiting us, talking to us about
what happened
- Cut off of oxygen during labor/delivery and that
Maura’s brain most likely has received damage
- On a ventilator to breath
- Talking about showing signs of seizures, on
seizure medication, very sedated
- You looked so helpless and weak
- You were so cold on your cooling blanket
Saturday Nov 30th
- We were so excited because you were breathing
over your ventilator; they took you off the vent and put you on CPAP. We were so
excited.
- You were still on a cooling blanket and highly
drugged with seizure medication
- Were not very responsive to us when we would
visit you.
- I was in a lot of pain recovery from surgery,
having bladder problems, couldn’t hold my urine, bad gas pains in abdomen,
incision pain. I could barely walk.
- My colostrum came in. I had been pumping every 3
hours… I felt such a small victory here and I held onto it
Sunday Dec 1st
- At 12pm they started to warm your little body
up, bringing your body temp back to normal
- You handled the warming process well but your
breathing became very labored so you had to be intubated again. I cried.
- You had an EEG, were put in a ‘brains’ machine
to monitor brain activity and watch for seizures
- You still had a lot of phenobarbital in you and
you were sedated.
- We were discharged from the hospital; I came
home and cried and cried.
- Friends put up our Christmas tree for us to have
something nice to come home to.
- Nurses set up a camera overtop your bed so that
we would watch you on our computer from home to feel closer to you.
Monday Dec 2nd
- James is still off work for Christmas
- An EEG was run to monitor for seizure activity
- We both visited you in the NICU and just tried
to enjoy the time together.
Tuesday Dec 3rd
- Found out that previous EEGs showed periods of
no brain activity or ‘pauses’ in brain activity, that was terrifying.
- MRI showed ischemic brain damage, proving that
your brain was injured during the lack of oxygen.
- Areas affected: posterior thalami, hippocampus
and basal ganglia.
- I broke down in the NICU, I felt so defeated.
Thoughts of you never coming home flooded me.
Wednesday Dec 4th
- Mom stayed the night to help with Ethan. I am
physically and emotionally exhausted. I’m in a lot of pain with the damage to
my bladder.
- Your central line to monitor for blood gases
came out, now that you are off the vent and doing well you only need gases to
be done as needed and not throughout the day.
- Edema (swelling) is WAY down; you are able to
open your eyes now because you aren’t so swollen.
Thursday Dec 5th
- Mom stayed the night again to help with Ethan.
- I got to hold you for the first time! I was so
over joyed. We sat together just cuddling.
- James went to visit before work that morning.
Friday Dec 6th
- Results from most recent EEG showed sings of
continuous brain activity. HUGE relief!
- I got to hold you again and James got to hold
you for the first time! He was one very happy daddy :)
- CPAP has been reduced from a rate of 20cm to a
rate of 10cm!
- James got to meet your neurologist face to face
for the first time, Dr. Taylor. We are so happy to have him as your
neurologist. He is very smart.
Saturday Dec 7th
- I went to patient first, I have developed a
kidney infection from the damage to my bladder :( I stayed in bed most the weekend. In a lot of pain.
- CPAP was reduced from a rate to 10cm to NO rate
and just a basic pressure of 8cm!
- I couldn’t visit but James went to spend time
with you. He loves being with you.
Sunday Dec 8th
- Emotionally rough day for me.
- This was not the way I planned December going. I
went from mom of 1 expecting number 2, decorating, nesting and getting so
excited… to feeling like a mom of none. ---- Baby in the NICU,
physically/emotionally can’t take care of my other.
- I feel like a bad mom.
- Still couldn’t visit because of my kidney, I
miss you so much.
Monday Dec 9th
- Finally get to see my baby again!
- Last central line came out that gave you fluids,
lipids and electrolytes.
- You are now doing feedings through your nasal
feeding tube only.
- You have developed a slight gag reflex! We are
praying hard that continues to get stronger so we can work on eating.
- OFF CPAP! Now on a high flow cannula on 4cm
- First day back at being full time mom again to
Ethan. Home with him with no help. We watched a lot of movies and were very
lazy.
- You had another MRI done to compare to the last
MRI.
- We brought in clothes, socks, hats and a blanket
from home to help you feel more comfortable.
- I dressed you in a sweet little onesie and put a
headband on you. Just because you’re in the NICU doesn’t mean you can’t look good :)
Tuesday Dec 10th
- Went out to lunch with friends to got out of the
house. It was a nice change of pace.
- We went to visit after work, no big changes…
digesting feeding better, no feed left over in stomach after the 3hrs.
- Pheno levels are becoming lower so you are a lot
more alert, moving your arms and legs, looking around. It is so nice to see you
become more responsive.
- Still waiting on MRI results…
- Feeling mixed emotions… so happy you are doing
well but wishing we would hear of more improvements. We want you home.
- Feeding are our biggest hurtle right now. The
cannula is really there to help encourage you to swallow and clear your airway.
The more you develop a gag reflex and swallow more effectively, the closer we
will get to doing bottle feedings. Feedings are really the only thing that is
holding you back from coming home.
- Holding you and snuggling and then putting you
back in your crib and leaving is getting harder and harder, not easier.
Wednesday Dec 11th
- Finally off high flow cannula. No more breathing
assistance, breathing on your own.
- MRI showed 2 of the 3 areas of her brain had
‘resolved’ or healed.
- However, this was a difficult visit to hospital,
emotionally having a hard time seeing you have to go through so much.
Thursday Dec 12th
- I couldn’t make it to the hospital.
- Feeling defeated.
- Having difficulty rejoicing in the victories of
yesterday, feeling like my spirit is being attacked/crushed.
- Wanting this to be over and for my baby to come
home, I’m done.
- Dreams of you being home by Christmas are
starting to seem highly unlikely.
- Feedings are the only thing keeping you at the
hospital.
Friday Dec 13th
- We have been told that you are going to be given
the next 2 weeks to either bottle or breast-feed. If you can then you can come
home! If you cannot within the next two weeks then we will move forward with a
G tube placement for feedings and you will come home to continue to work on
sucking and swallowing to learn to bottle feed at home.
- I am now a lot more involved in you care and
needing to be at the hospital for longer stays and even twice a day to help
with the breast-feeding and paci training right now.
- Today we tried to breast feed twice for the
first time.
- We also did skin to skin for the first time
today.
- You do not like breast-feeding so far, you get
very upset.
- You did however; make great improvements on
sucking your paci and swallowing more.
- Hopefully with more practice and
consistency you will get stronger and stronger there.
Saturday Dec 14th
- Went to see Santa with Ethan and then went to
the hospital to see Maura.
- We were told that you gag reflex is getting
stronger
- We gave you a bath, your first bath from us :)
- You are getting better at sucking your pacifier
- Grampy was able to come back and see you, he has
not seen you in a while, not since when you were more critical
- Still working on moving you hopefully into
progressive care and out of intensive care since you are no longer critical.
Sunday Dec 15th
- We went during Ethan’s nap time, a friend stayed
home with Ethan.
- I was emotional because I’m just ready to be
your mommy full time.
- I was scared what challenges you are going to
face, I never want you to hurt or struggle.
- Scared of the unknowns of what our life is going
to be like.
Monday Dec 16th
- James took the day off work
- Our friends son who is in the NICU also, Elijah,
passed away. He was a preemie.
- We held you tighter and closer, thanking God for
your life.
- We want you home!
Tuesday Dec 17th
- Met with PT, to learn how to do things myself to
help you work on muscle strength as you grow.
- Talked about insurance stuff with the discharge
nurse. Lots of information, a little overwhelming.
- We snuggled lots.
- Your cry is getting so strong haha you are so
opinionated :)
Wednesday Dec 18th
- First day trying to bottle feed
- You barely take anything, its very difficult for
you, but we will keep trying.
- Daddy went up there without me, I wasn’t feeling
well.
- He was so excited he got to give you your first
bottle.
Thursday Dec 19th
- Mom and I went up to visit.
- We gave you a bath, fed you a bottle, you only
took 3cc.
- We will keep trying.
Friday Dec 20th
- Ethan went to Grammy’s, so we went up to spend
the evening with you.
- Rough night for you, you were very gassy and
upset.
- We held you and did our best to soothe you.
- I hate leaving you.
Saturday Dec 21st
- The funeral for Elijah. James sang for them
during the service. Horribly emotional for both of us.
- Finally talk of discharge plans: g tube, 2nd MRI
- Short visit, I hate how busy our lives have
become.
- Lots of snuggles and kisses
Tuesday Dec 24rd
- Jan 3rd surgery date is set for your
G tube.
Wednesday Dec 25th
- Christmas day, we got to take you into room on
the floor so we could all be together and not have to shuffle back and forth 2
at a time.
- You met your brother for the first time :)
- This was the best gift we could get (other than
you coming home)
- So bittersweet.
Thursday Dec 26th
- We just snuggled and enjoyed time together. :)
Friday Dec 27th
- James and I aren’t feeling good, don’t want to
get you sick.
- We did phone checks instead of visits.
Saturday Dec 28th
- You took 20ccs last night!
- So hopeful for more improvements with your
feedings.
Tuesday Dec 31st
- I met with OT to learn home care.
- I met with patient advocacy to apply for
Medicaid and SSI.
- I’m learning there is a lot to being a special
needs mom. Taking notes as much as I can to learn.
Wednesday Jan 1st
- Talked to surgeon on the phone for your G tube.
Really nice guy.
- Still moving forward with a Jan 3rd
surgery date.
- It’s New Years? When did the holidays come and
go?
Friday Jan 3rd
- Surgery is finally here.
- Longest morning ever, waiting around during a
3hr surgery.
- I ran off and hide by myself to cry.
- I hated seeing you in pain.
- Your cry was so hoarse because of the
intubation. :(
Saturday Jan 4th
- Upped your pain meds because you aren’t
comfortable.
- It kills me to see you like this, I hate that
you are hurting.
- Surgically you are healing well.
- I want this to be over already.
Sunday Jan 5th
- You are better, though still having periods of
inconsolable crying
- One day at a time. We can do this.
Monday Jan 6th
- I just spent time with you.
- You are healing though still uncomfortable, it
will just take time… I’m trying to be patient but that isn’t something mommies
have when it comes to their babies.
- Waiting on doctors to give a final discharge
plan.
Tuesday Jan 7th
- Finally a plan!
- Upping feeds to bolus feeds, MRI thurs, stay the
night Friday… COME HOME Saturday!!!!!
- I felt like this day would never come
Thursday Jan 8th
- I wend into the hospital to stay an extra night.
- I’m just so ready for you to be home.
- Medical equipment company came in and gave me
your pump, food, and suction equipment for home. A little overwhelming but we
can do this.
- You and I roomed together out on the floor so I
can practice with my pump.
- We finally got to spend some quality, peaceful
time together.
- You kept me up all night haha I loved it.
Friday Jan 9th
- Lots of just hanging out and working with the
equipment we will have at home so I can get comfortable using it.
- James brought Ethan up for dinner and we all ate
dinner together like a family. Finally feeling like a family of four.
Saturday Jan 10th
- Today is the day!!
- You are coming HOME!!
- Words couldn’t describe how happy we were.
- I cried the entire way home.
- Grammy and Grampy came over for a celebratory
dinner at our house to love on you.
After 6 weeks in the NICU, finally life as family of four can begin. :)
